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Patient Involvement in the Governance of the German Human Genome-Phenome Archive (GHGA): Patients' perspectives and recommendations for implementation

descriptionPublicationkeyboard_double_arrow_right Other literature type , Project milestone 30 Jun 2023 English Publisher:Zenodo
Authors: Apondo, Eric; Bruns, Andreas; Züger, Andrea; Mehlis, Katja; Müller, Anne; Brunsmann, Frank; Eufinger, Jan; +4 Authors

doi: 10.5281/zenodo.8099345 , 10.5281/zenodo.8212916 , 10.5281/zenodo.8099346

Patient Involvement in the Governance of the German Human Genome-Phenome Archive (GHGA): Patients' perspectives and recommendations for implementation

Abstract

This White Paper summarizes the findings from a participatory study that was conducted with patients in Germany from the cancer and rare diseases communities to explore their perspectives on patient involvement in the governance of genomic data archives in general and of the German Human Genome-Phenome Archive (GHGA) specifically. It also describes a concept for implementing meaningful patient involvement in the governance of GHGA, which can be adopted by other data infrastructures.

This project was funded by the Deutsche Forschungsgemeinschaft (DFG, German Research Foundation) as part of GHGA – The German Human Genome-Phenome Archive (www.ghga.de, Grant Number 441914366 (NFDI 1/1))

Keywords

Online deliberative forums, Governance, Patient co-researcher, Genomic data, Deliberative forums, Patient involvement

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citations
This is an alternative to the "Influence" indicator, which also reflects the overall/total impact of an article in the research community at large, based on the underlying citation network (diachronically).
BIP!Citations provided by BIP!
popularity
This indicator reflects the "current" impact/attention (the "hype") of an article in the research community at large, based on the underlying citation network.
BIP!Popularity provided by BIP!
influence
This indicator reflects the overall/total impact of an article in the research community at large, based on the underlying citation network (diachronically).
BIP!Influence provided by BIP!
impulse
This indicator reflects the initial momentum of an article directly after its publication, based on the underlying citation network.
BIP!Impulse provided by BIP!
0
Average
Average
Average
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Cancer Research